Brooke Nolan and Nikitah Habraken talk to the SSA about their work on hepatitis C, the 10th International Conference on Health and Hepatitis Care in Substance Users in Glasgow this October, and how they involve people with lived experience throughout their work.
SSA: So, first things first, what is INHSU?
Brooke Nolan (marketing and communications manager): INHSU is The International Network on Health and Hepatitis in Substance Users (INHSU). Many people can’t access the health care and the services that they need to live well – often because of stigma and discrimination. Our vision is a world where these people have the equitable access to evidence-based services and treatment they need to improve health and live well.
We are a membership-based organization of researchers, clinicians, nurses, social workers, policymakers, advocates, and most importantly, people with a lived or living experience of using drugs. We bring these different groups of people together to facilitate knowledge exchange. The main knowledge exchange activity we do is our big conference every year, but we also have education programs, interactive online tool-kits to support service delivery, virtual events and more. If you visit our website, you’ll find lots of resources.
With the DAA therapies, it’s now possible for us to eliminate hepatitis C as a public health threat globally
As well as knowledge exchange we have an online education program on hepatitis C in people who use drugs, and that’s currently available in 10 countries. We’re looking at rolling out to another five in the next 18 months or so. Our third area is advocacy, and we do a lot of storytelling and films to raise awareness of the issues that people who use drugs face globally.
How can people get involved with INHSU?
BN: The first thing would be to join as a member. We have lots of opportunities for members such as discounted conference rates, as well as the opportunity to join committees and special interest groups. Currently, we have early-and mid-career researcher committee and a community committee of people who use drugs from across the world. We have a nurses committee and a Prisons Special Interest Group, which focuses on hepatitis C and the health of people who use drugs in custodial settings.
We are always looking for interesting projects and models of care that we can profile. We’re very open and want to collaborate; anyone can reach out to us and have a discussion about anything that’s innovative and exciting that we think we could help share.
Nikitah Habraken (acting executive director): We also have opportunities to contribute to new resources as a writer or reviewer. One of the biggest things that people can do to be involved with INHSU is to come to our annual conference. Like the SSA, our annual conference is our flagship event. As well as attendance, we have hundreds of abstracts submitted every year, and we also offer scholarship programs to support attendance for EMCRs, people with lived experience, and practitioner and policy scholarships.
Sounds exciting, tell me about the INHSU conference.
BN: This year it is in is going to be in Glasgow from 19 to 21 October and will be our first in-person conference since 2019. Our conference takes places in a different location each year.
NH: It’s a three-day conference and this year [2022] we have sessions on a range of issues related to the health of people who use drugs, for example drug policy, hepatitis C and harm reduction. The conference is multidisciplinary and welcoming, profiling the latest research across epidemiology, social science, clinical research and models of care from across the globe. There are many different types of interactive sessions you can choose from as well as the networking dinner, of course. That’s always a highlight!
In the lead up to the main conference, we have a half day event on hepatitis C among people who use drugs in prisons. We also have a full day dedicated to our community of people who use drugs or who have used drugs from across the world. This will be entirely on their narrative which will then feed into the main conference. These Community Days are always a very important part of the conference. This year we will also host an early-mid career researcher networking event ahead of the main conference.
In most places in the world, the people who have hepatitis C are people who use drugs and who come from extremely marginalized populations and communities. They should be given the same access to treatment as for any other disease, in any other population.
The annual INHSU conference was started by a group of clinicians and researchers back in 2009, after they attended other conferences on viral hepatitis and saw that there was very little content on hepatitis C among people who use drugs, yet hepatitis C was such a big issue in that population. So, they decided to make their own conference that was initially focused on hepatitis C among people who use drugs and remained that way for a number of years.
What changed in 2015?
NH: In 2015, new treatments came out for hepatitis C called Direct Acting Antivirals (DAAs). They treated hepatitis C in a way that wasn’t possible before, providing a cure with little to no side effects. That really changed the landscape for hepatitis C and paved the way for INHSU to start focusing on other topics too.
A couple of years ago, we officially expanded the scope of the conference and INHSU to move beyond hepatitis C to the broader health of people who use drugs.
It’s World Hepatitis Day today (28 July 2022), tell us why hepatitis C is so important?
NH: Hepatitis is an inflammation of the liver, most commonly caused by a viral infection. There are five main hepatitis viruses – A, B, C, D and E. These five types are of greatest concern because of the burden of illness and death they cause and the potential for outbreaks and epidemic spread.
Hepatitis can affect anyone, but it has a disproportionate effect on the people and communities most underserved by health systems – including people who use drugs. In terms of hepatitis C, with the DAA therapies, it’s now possible for us to eliminate hepatitis C as a public health threat globally. The WHO have set targets to do this by 2030. But, for this to happen, there is an urgent need to simplify hepatitis C care and make it more accessible to more people who need it.
World Hepatitis Day takes place every year on 28 July and brings the world together to raise awareness of the global burden of viral hepatitis and to influence real change. With a person dying every 30 seconds from a hepatitis-related illness – we can’t wait to act on viral hepatitis. On World Hepatitis Day we call on people from across the world to take action and raise awareness of viral hepatitis, which includes hepatitis C.
BN: People should also care about hepatitis C because of the population that it affects. In most places in the world, the people who have hepatitis C are people who use drugs and who come from extremely marginalized populations and communities. They should be given the same access to treatment as for any other disease, in any other population.
NH: We’re so fortunate in many countries to have had access to these DAA hepatitis C treatments for a number of years now. But there are a lot of countries globally that don’t have access to the medications and just are not in the same position.
BN: It’s important that we don’t forget about them, especially because hepatitis C can, if left untreated, result in liver failure. It kills people.
What’s the future for INHSU?
NH: The future we want to see is one where people who use drugs have equitable access to the evidence-based services, treatment and health care and support that they need to live well. That’s what we hope for the future and everything we do really works towards that.
BN: I’d like to see the future more prominently include the voices of people with lived and living experience. Whenever you are talking about the health and well-being of people who use drugs it should be done in collaboration with the community.
Brooke Nolan is Marketing and Communications Manager for INHSU and Nikitah Habraken is Acting Executive Director for INHSU.
You can email them at info@inhsu.org.
edited by Rob Calder
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